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What is Chronic Lymphocytic Leukemia

Chronic lymphocytic leukemia (CLL) is a cancer that affects a type of white blood cell called a “lymphocyte.”

Lymphocytes help your body fight off infections. They are created in the bone marrow, which is the soft center of your bones. If you have CLL, it means your body makes a very high number of lymphocytes that are not working right.

They say”Older Adults” get CLL, but to my findings younger adults gets it as well. In some cases it’s found in children.

It is so silent in your body, you may never know you have it.

Some people never need treatment. They call that the “watch and wait”. Which means, the doctor will keep a watch on your blood count to keep track of your CLL.

Sometimes you do need medication, it can slow the disease and ease symptoms. People who get medical care live longer today because doctors are diagnosing CLL earlier.

It’s natural to have worries and questions about any serious condition. You don’t have to face things alone. Discuss with your friends and family about any concerns you have. Let them know how you feel and what they can do to help. Talk to your doctor about how to join a support group. If you decide to join a support group, please search for people that is living positively with CLL. You can also talk to me. Ask me what you need to know I don’t mind shedding some hope to your future.

What Causes CLL?

According to my doctor it is mostly environmental. I have read upon these other reason and it is not correct. Here are some false examples. They may not be false but according to me and my experience this is what I have to say:

  • You have a parent, sibling, or child who has CLL.- Wrong I’m the only one in my family and yes I’m a grandma
  • You’re middle-aged or older.- Now that’s partially correct. In some cases they are children to young adults
  • You’re a white man.- Wrong. I’m a Black Woman
  • You have relatives who are either Eastern European or Russian Jews.-Wrong I am a Black American

If you were exposed to Agent Orange, widely used during the Vietnam War, your chances of getting CLL may also be higher.- OK mine is a little close to that because the jobs I worked during my earlier years was very environmental. Back in my days I did construction, crazy smells, I worked in plants making cloth, fiber flying everywhere, worked in a coal mine, mask were not a PPE for us. I was a welder. I did painting. Most of the jobs I worked on was environmental. Some of them had asbestos and we were not thinking of it as being a problem.

What are the symptoms of CLL?

You may have no symptoms for a while. Over time, you may have:

  • Swollen lymph nodes in your neck, armpits, stomach, or groin. Lymph nodes are pea-sized glands in these and other areas of your body. I had these symptoms but I thought nothing of them. Just little tiny pimples popping out here and there
  • Shortness of breath. I did not notice that at the time.
  • Pain or fullness in your stomach, which may be because the disease has made your spleen bigger. That were not a problem. I love to eat
  • Fatigue- I love to dance. One night my husband and I went dancing. I got so tired, so fast for no reason. That’s when I knew something was wrong
  • Night sweats I blamed my night sweats on menopause all the way.
  • Fever and infections.- I never had a fever or infection
  • Loss of appetite and weight- No loss of either.
  • Bruising.- I started getting big bruises in weird places
  • Nose Bleeding- I never had a nose bleed

How to Get a Diagnosis for CLL

I had to go to the Emergency because I felt something was wrong with me getting so tired, so fast. When they gave me a blood test, my Hemoglobin was a 3. The regular for a woman is a 12.0 to 15.5. Many Blood transfusions came with my Diagnosis,

If you have one or more swollen lymph nodes, your doctor may ask a series of questions.

Your doctor will give you a blood test if they think you may have CLL. The results show how many lymphocytes, platelets, and red and white cells are in your blood.

If your white blood cell counts are high, you will get a bone marrow aspiration and biopsy.

What is the Treatment for CLL

Some kinds of CLL grow very slowly. If yours is in the early stages or it’s not causing any problems, you probably don’t need treatment. Studies show that it doesn’t help. It’s called the” Watch and Wait”

It’s very important you should keep up with all your doctor visits. Your doctor will closely check to make sure your condition hasn’t changed. No excuses what so ever

You may start treatment if your doctor notices a change, like the number of lymphocytes in your blood goes up quickly, there’s a drop in the number of your red blood cells, or a lymph node is getting bigger.

Chemotherapy (chemo):

Targeted therapy: 

Radiation therapy: 

Surgery

Leukapheresis

Clinical trials

Stem cell transplants

To find out more about these treatments Please check out the Cancer Research Institute

 

What You Can Expect

CLL often grows slowly. With good care, you can live well with it for many years. I was diagnosed with CLL Dec.2 2014 and I live a happy healthy life.

 

Getting Support

The Leukemia & Lymphoma Society has resources that can help you deal with different aspects of CLL, from financial to emotional issues. These resources include local education programs, support groups, online chats, and one-on-one support from someone who has been through it. They helped me financially when I could not work, They took care of the medical bills. My cancer care center hooked me up.

Thank you so much,

Carrie

 

 

60 Comments

  1. Wow what an amazing article on Chronic Lymphocytic Leukemia. This article explains CLL very thoroughly and will help a lot of people with symptoms of CLL and will help with the causes and myths as well. Thank you for this very informative and helpful article on CLL. I will share this article to my family and friends.

    1. Thank you so much for visiting my site Jason. I am happy that you like it. I hope my site help anyone who is dealing with any diagnoses. My purpose is to give them hope.

  2. Hi, thanks for sharing about Chronic Lymphocytic Leukemia and your experience with it. It is interesting and very true that you said you can still live well and have a healthy life after being diagnosed with Chronic Lymphocytic Leukemia provided you take very good care of yourself. This is important because most of the diseases out there like HIV are manageable but most of the times people are too scared and misinformed about how to take care of themselves and to live a healthier life with the disease. Thanks again.

    1. Hi Nedia,

      People needs to know there is life out there. When the doctor says you have something bad, don’t take it as a death sentence. Take it as a choice sentence. You know what I mean. Thank you so much Nedia for visiting my site. Please feel free to come back

  3. I really liked how you pointed out the discrepancies in the assumptions. A lot of people may be dismissing serious symptoms because they’re reading bad information that tells them they’re couldn’t get this because they’re this or that. It needs to be spread and people need to know that this details wont eliminate the possibility. 

    1. Thank you so much DashDNations, Your words of approval means so much to me. I do pray other people visit my site so hopefully I could help them.

  4. Hi Carrie, Thank you for educating me about chronic lymphocytic leukemia. This is the information that answers all the major questions about CLL including effective treatment. The resource for and the description of the Leukemia & Lymphoma Society is particularly helpful. Your hopeful outlook and big smile are a wonderful addition to the day!

    1. Hi Aly,

      Thank you so much for visiting my site. Yes I was amazed when The Leukemia & Lymphoma Society took over my bills. They are awesome.

  5. Hi Carrie, I’ve gone through your article about chronic lymphocytic leukemia. I find this post very educative and informative. I did not even know that cancer is very broad that it can also attack the white blood cells as you clearly mentioned in this post. Thank you much for sharing such useful information about our health. I promise to share this important information further to spread the word. I will be visiting your website more often to learn more about chronic lymphocytic leukemia. Thank you once again.

    1. Hi Kokontala,

      Thank you so much for visiting my site. I am happy to know you are enjoying and thank you so much for sharing it with others. I pray they understand and share as well.

  6. I have been researching a lot if CLL is genetic or not. And my conclusions that Chronic lymphocytic leukemia has not generally been considered to have an inherited genetic basis. However, I have found papers that state indirect evidence that a subset of CLL cases may be ascribed to the inheritance of an autosomal dominant gene.

    1. Hi Abel,

      I thought it was genetic because I lost a sister to AML,(Acute Myeloid Leukemia) in 2019. I asked my doctor was it hereditary and he said it was 2 complete different cancers. They had no connections. But with my research they seems to relate in some kind of way. I’m thinking it might have something to do with genetics. I do not know for sure. I have to research deeper. 

      Thank you so much Abel

  7. Hello there! This is a very informative article! It’s crazy how there are so many misconceptions that people may have with various diseases. I am glad that you defined everything so clearly and so now I have a better understanding of CLL. A hemoglobin of 3 compared to the range you provided is like super low. Thank you for creating this article and providing so many resources and hope for those who have CLL.

    1. Hi Mike,

      Yes my hemoglobin was a 3, I had to have about 3 blood transfusions to regulate it. Before the transfusion, they had problems finding a cross match. So I was on Emergency Watch overnight.  I did not know my life was in danger until they told us I was staying in the hospital. I was not sick. I was just real slow. After regulating everything, it took 2 days for them to tell me I had CLL(Chronic Lymphocytic Leukemia). I ask what stage? Answer Stage 4. Talking about CRAZY!! That was crazy. Not crazy anymore. When life throws you lemons, Make lemonade.

      Thank you so much for inquiring.

  8. This is a very informative and educational article on Chronic Lymphocytic Leukemia. This will be particularly helpful for anybody that has questions about CLL. I like how you pointed out the discrepancies between your actual situation and the assumptions that are often made. 

    It is great news that you are managing your disease and can still live a good life. I wish you all the best and thank you for enlightening me on this serious illness.

    1. Thank you so much LineCrowley, for visiting my site,

      Your approval and kind words means so much to me. 

      Thank you for taking the time to visit my site. God Bless

  9. Such an inspirational real-life story. I am so sorry that you’ve had to deal with this and everything that comes along with this disease, but I’m so glad to see that you’re managing, you’re doing your best to help yourself and help others; that’s the definition of a warrior and an advocate. The worst part about having a disease is not knowing what other organs may get affected. For me, I’ve had type 1 diabetes for the last 19 years of my life and that has turned into stomach issues, diabetic retinopathy, and kidney failure. It’s a scary road but I always remember that I’ve gotten so far by my own that walking that extra mile can potentially help me live a few steps longer. 

    1. Hi Stephanie,

      I am so sorry about what you are going through.  It doesn’t matter if you have cancer, leukemia, or type 1 diabetic. That’s life’s curve ball and we all have to learn how to live with whatever it is.  I applaud you on your journey of life dealing with type 1 diabetes. I commend you on your strength as well. People thinks cancer is the only thing that is bad. No not just Cancer. Your illness is just as bad.  It doesn’t matter, we have to love and encourage each other to be strong and choose to be Happy in the mist of it all. Thank you so much Stephanie for sharing your story as well. God Bless you 

  10. Good to learn about Chronic Lymphocytic Leukemia and tips on how one can manage any such ailments! Most people believe in the culture of maintaining their health and see lots of improvements in their daily living. Glad you shared the same culture! No deadly disease is hard to manage, though some may be incurable. Thanks again for your health tips!

    Joyce

  11. I learned a lot about Chronic Lymphocytic Leukemia, and thank you for sharing your story. It sounds like you are a very strong lady which is very admirable. And your smile, sums it all up. Keep smiling beautiful. 

    It’s interesting how the environment can cause health problems. I always wondered why sometimes on certain applications it would ask. “Do you live in a home that was built before 1978?” And the application would say that they were asking because homes built before 1978 had lead in the paint. Something like that. 

    So, from what I learned lead in the paint can cause leukemia too. Either way, I’m just so glad to hear that you are doing well and keeping your head up. Also, The Leukemia & Lymphoma Society was a blessing. I never knew they had programs like that. That is amazing…Have an awesome day!

    1. Hi Lakisha Thank you so much, Yes the Leukemia & Lymphoma Society have all kinds of programs to help the patients that is dealing with Leukemia and Lymphoma. Lucky me I happen to have both. LOL

  12. Again great articles and very informative.
    I know misinformation and panic is a great cause
    for stress and can actually sometimes make it a horrible experience
    because you have to bear more responsibility for yourself.
    Having people like you writing and informing others
    who might or do have this is a great way to give a helping hand
    which really befits your website URL link hehe.

    Great job! And I learned a thing or two today.

    Many thanks again,
    Leon

  13. Thank you for documenting your journey so beautifully on chronic-lymphocytic-leukemia. With your articles you are providing so much help and support to those who are currently challenged and their families. You covered very well how how to identify the symptoms , how to get the diagnosis and the possible treatments and places to get the necessary support.

  14. Wow. I have heard the term, and references made to the condition. Thank you for a full explanation and listing of the symptoms of CLL. It seems like the condition would be hard to diagnose because the symptoms resemble those of so many other conditions. You certainly are blessed because although you have been diagnosed since 2014, there are many symptoms that you do not have. Thank you for the enlightenment. To your good health !!!

    1. Yes JJ, I went to get a check-up early that year, but there was no signs at all. I was fine. I use to donate blood for many, many years to the Red Cross still nothing. It happened quick fast and a hurry. I had to calm my mind, body and spirit quick fast. 

      Thank you so much JJ 

  15. Thank you for sharing about the Chronuc Lymphotic Leukemia with us. I cannot imagine what you are going through. It is crazy that we all can potentially have it but we just never know. I will watch out for the sign and be sure to get the check up annually. I am in my middle age afterall and anything can happen. 

    1. Thank you so much Nuttanee. You are so right, That’s why it’s important to live your life to the fullest now. We never know what the future holds for us. Yesterday is History, Tomorrow is a Mistry. Today is the Present. That’s why each day is a Gift. I treat each day as such.

  16. I love it when experts like you go into the absolute depth of what you know on unorthodox illnesses like this one that many of us are not even aware of. You guys provide not only education but life saving tips that could prevent that for ourselves or for people we might now so I really appreciate that. Want to come down here and leave my comment of appreciation for you

  17. Interesting, and I have known a few people in my life with CLL who were diagnosed in their forties and lived to their nineties, so at least in a lot of cases, this type of cancer is not a death sentence like some of the other types are.

    My Mom in Law has too many red blood cells and she was diagnosed with this almost ten years ago and has been on chemo tablets ever since. She is close to ninety now and still going strong. I think this is the opposite of what you have.

    It is amazing how the symptoms differ from person to person. In your case, you hardly show any of the normal symptoms, so it must be extremely difficult for a doctor to know whether or not to test a patient. I wonder how many people don’t know that they actually have CLL?

    1. Yes Michel, you are right. I was diagnosed at 50 and I feel great. It’s really not that bad. My symptoms coincide with menopause. I accepted it as such. Only way I caught it was I could not dance. I was dancing too slow. I knew something was wrong. Guess what? I can dance again. My legs hurt a little bit but they say it’s arthritis. I can deal with Old Arthur, it not so bad. He reminds me I’m still alive LOL

      Thank you so much Michel

  18. Hello Carrie I am so glad to have found your website because visiting it everyday is always inspiring to me. You are doing a great job and I would like to encourage you to keep doing the good job you are doing in extending love to the world out there.

    Thank you for making us aware of Chronic Lymphocytic Leukemia. It is good to note the symptoms because many times people stay at home with symptoms thinking that it is nothing and that they will go aware. It is important to visit your doctor every time you notice any changes in your body as it may be something serious. It is very easy to blame fatigue and night sweats on menopause or blame nose bleeds on a hot weather. The most important thing is to get yourself checked for changes you may notice on the body.

    Thank you for yet another great article

    1. You are absolutely right  Boi, Sad part is when people do go to the doctor and they often get dismissed from their symptoms. I probably had this earlier but when I went to the doctor, I always got nothing. I started ignoring them myself because I knew the doctor will say nothing is wrong. 

      Thank you so much Boi

  19. Oh wow, thank you very much for this article!  It’s interesting to see that CLL is often seen as something that attacks older people, but it also attacks younger adults too.  Like you said, it builds slowly and can go without detection, and probably for a while.  As such, it’s important to access risk factors and see a doctro to make sure that you do not have CLL, and if so, it can be detected early on and treated.

    1. Yes Jessie CLL is very silent. They say this is a mild type of Leukemia because when caught at stage 1 there is nothing they could do but watch and wait. But if the person knows at stage 1, they could control it without chemo. 

      Thank you so much

  20. Hi Carrie. It’s great that you took the time to write out your personal experience with chronic lymphocytic leukemia. I have not experienced the condition personally, but I believe that the more people share their honest experiences online, the more chances we have of learning from each other. This way we can get firsthand information from a variety of sources and come to our own conclusions as to what solutions we want to apply.

    All the best,

    Erick

    1. Thank you so much Erick for visiting my site. 

      Yes I am trying to let others know that being diagnosed with anything does not mean it’s a death sentence. Help them not to be afraid. Diagnoses is more of a Curse with a Blessing. It really depends on how you look at it.

      Thank you again Erick

  21. I don’t know all that much about cancer although I have lost several family members to different forms of it.

    I think that it is amazing that you have put yourself out there in this way hoping to shed some light and hope onto other people’s lives who might be struggling through concern right now. You are a light ina dark world!

    I also think that it is so great that you are trying to smash the narrative of false assumption!

    Please feel free to shoot me an email if you are ever needing a sounding board yourself? We can not pour from an empty cup as they say!

  22. Hi Carrie, 

    Thank you for sharing about CLL. I was so uncomfortable reading that, I understand why it is real, and to learn about some of the possible courses that you were not even aware of makes it scarier. I think your article can help prevent as now there is some awareness of these exposures that might lead to having CLL.

    I really appreciate your sharing and thank you for your generosity in sharing your life experiences.

    Ntlhane

    1. Thank you so much Nithane I’m so sorry you was uncomfortable. I am trying to be a honest as I can but I don’t want to make anyone uneasy with my article. I just want them to be aware that their is still life after a diagnoses of any kind. I also thank you for your approval of my story.

  23. Thank you very much for sharing your story. A while ago, my friend has similar symptoms to yours, but it turns out to be different cancer (but still dangerous). So, it may not be hereditary, but is there any way to minimize the risk of getting this cancer? Is this cancer has a higher or lower survival chance compared to other high killing cancers?

    1. Hi Alblue, 

      Sorry to say I don’t think there is anything to do to minimize the risk. We can do anything and everything but we never know what life has for us. A man that played the intense trainer on the Biggest Loser, well he had a heart attack in the gym, Thank God a doctor was in there working out and was able to save him. True story as well. So you see we don’t know. Just please choose to live a happy life today. Choose again tomorrow. As long as you have life choose to be HAPPY!! You will be challenged but it’s your choice. Thank you so much Alblue

  24. Excellent article on Chronic Lymphocytic Leukemia, I have looked at other articles on your website and I am very impressed with your positive attitude and outlook on life. This is more important than almost anything and is sorely missing in many people’s lives. I think you will help a lot of people with your example.

    1. Hi AL.S 

      Thank you so much for liking my articles. Your encouragement and approval means so much to me.

  25. Never knew about this and no wonder it’s so difficult to diagnose- so many of these symptoms could easily be symptoms of other ailments and some quite harmless. I did notice that I tend to get breathlessness sometimes, but to be fair I am not the most in-shape person…

    I wish you well. Personally, I am very excited for the recent advances in CRISPR technology in the medical field. Here’s hoping that with that (or any other technology) they’ll be able to make better treatments which will reduce those symptoms for you and others.

    1. Hi Christina, Yes CLL is very difficult to diagnose, That’s why it had 90% of my bone marrow. I was having symptoms but I had no idea they were something serious. When I got slow and tired my radar went up telling my brain something is seriously wrong.

      Thank you so much Christina

  26. Thank you for adding your personal experiences to the mix along with spreading awareness of this until now unknown condition. I find it helpful to hear someone’s own experience rather than reading a textbook definition of a disease. Especially the possible environmental causes, as I have done some of these jobs you have done too. Something to watch for in the future. Prayers for your health.

  27. Thank you for this information, and I appreciate how candid you are with your personal experience with chronic lymphocytic leukemia.  It sounds so scary in part because the symptoms are not as apparent at first, unless you are really paying attention to them.  How did you know that they were swollen lymph nodes instead of pimples?  Did they hurt?  I appreciate your positivity in this article.

    1. Hi Max, I did not know they were lymph nodes. I thought they were pimples. Months later when I was diagnosed I did some research, then I realized that what it was.

      Thank you so much Max.

  28. Hello, fascinating reading on a topic that broadened the eyes of many people and me. I had no idea about this form of cancer before, and thank you so much for explaining it in bulk. As I understand it, this is a form of blood cancer. I somehow dropped a burden from my heart when you said that you can still live an everyday life despite looking at this cancer, and you will not have pain. And that you are still a cheerful mother and also a grandmother to your children. My experience shows that in such a case, you have to continue living your life just as well as you can and even better because it can’t take away one thing from you, faith in yourself.

    1. Hi Lea, 

      CLL sounds bad but it’s not. When you decide you are going to live your life until you die. That’s what you do. No, I do not have pain and I have not been sick for many many years. All my blood level are good. I go to work everyday as a supply tech. I do not take medications at all  I go to my doctors visits every 6 months. So far so good

      I am very grateful and very thankful. I have faith in God. I can not do anything without God.

      Thank you so much Lea

  29. All my life I have heard about CLL but I never understood how people got it and why. I did think it was hereditary but I can see now that it could be chemical poisoning as in so many other diseases. My father had Chronic Fatigue Syndrome after our house was sprayed with chemicals for pests, he never recovered. Obviously, we need to take more care with these dangerous work and home environments.

    Great advice on getting diagnosed and caring for yourself with this disease. Thanks

  30. A very thorough article on CLL.  It was amazing that you were still able to walk around with a hemoglobin of 3!  Are blood transfusions a regular occurance with CLL?  How do you learn to live with the disease?  Is a stem cell transplant an option or is that saved for more advanced cases?  I am so glad you are able to live a full life with a chronic illness and seem to be thriving, as well.  Enjoy those grandkids!

    1. Hi Kay, God is good to me!! I use to be a big time blood donor. I am so grateful that I was blessed with blood transfusions because they saved my life. I believe God gives us a choice to do things because they will come right back at you. I gave blood, Life set me up to receive blood. I am good  my hemoglobin is a 12.5 now. All my levels are up now. I do not get blood transfusions anymore. It was just for that time. Stem cells are an option but I did not need them. I am glad God is not through with me yet.
      Thank you so much Kay

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